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Getting it right for people with learning disabilities

15 October 2014

Treat Me Right! started out providing learning disability training for healthcare staff in an NHS Trust, but has since snowballed, driven forward in part by a man with Down’s syndrome. Editor Dan Parton reports:

When John Keavney, who has Down’s syndrome, collapsed at his home with breathing difficulties in 2009, he was rushed to hospital. He remained there for four weeks and found his experience difficult, confusing and sometimes upsetting. But once he recovered, Keavney resolved to put his experiences to good use and improve the situation for other people with learning disabilities who have to go into hospital. He became an active member of the Treat Me Right! campaign, and now delivers training to health professionals – from doctors and nurses to midwives, students and junior doctors – and much more at his local NHS Trust in Ealing.

As part of the Treat Me Right! team, Keavney works alongside Elsa Morris and delivers up to four learning disability awareness courses each month at Ealing Hospital and Ealing Community Health Services, to groups of between six and 15 people. He talks about his experiences and how healthcare professionals can improve their treatment of people with learning disabilities. “I help to write the training and use slides to show what I mean,” says Keavney.

Treat Me Right! is run by service provider Certitude and seeks to improve the everyday life experience of people with learning disabilities by supporting them to access services such as healthcare and housing more effectively. The project began in 2008 in the wake of Mencap’s ‘Death by Indifference’ report, which highlighted the inequalities that people with learning disabilities can face in healthcare settings.

“We approached Ealing Hospital and said ‘can we help with any of this?’ They were very open and I think that’s what has made it a success,” says Morris. “We put forward a proposal for how we could help them and we worked with the local authority and Ealing Hospital and they agreed to part fund the project for 18 months, and we’re still going six years later.”

Now, the Treat Me Right! team do a variety of training and educational courses for professionals. The training, which is tailored to each group they are talking to, often covers such things as facts and figures about how poor people with learning disabilities’ health is compared to the general population, healthcare staff’s legal responsibilities and how they have to make reasonable adjustments – which can be quite simple things – and giving tips on what they could be. “We think this has embedded a massive amount of change in the Trust,” says Morris. She believes more than 1,000 healthcare staff have been trained so far.

Passport to success Treat Me Right! has also developed tools for healthcare staff to improve the care they give to patients with learning disabilities, such as the hospital passport, a short document that gives vital information about a person, such as their conditions, likes and dislikes and any support they may need.

Morris adds that they also teach staff how to fill a passport in. “They practice on John, because it is only as effective as the person who fills it in,” she says.

“Sometimes they will say something really complicated and then John will talk about something completely different. But that in itself is good because we say ‘maybe you could put that differently, like this, and he’ll understand what you say and can answer more effectively and you can get more information.'”

Keavney adds: “We talk them through it and I pretend I’m a different person and Elsa is my carer – although I often say ‘that’s my mum!’. Its good fun and they ask me lots of questions.”

Working with students Treat Me Right also now provides training services to nursing students at the nearby University of West London. This covers an introduction to learning disabilities, but includes a number of practical activities.

“We do an exercise with the students where they have to describe a picture without speaking,” says Morris. “We use it as a small insight into how people who don’t use speech may feel. We ask them how they felt -‘frustrated’, ‘embarrassed’, ‘didn’t want to do it’ – so we say ‘imagine if you can’t speak and dealing with that every day. Sometimes you would give up if people didn’t understand what you were saying.’ It’s a fun activity.”

Keavney also gets involved in activities: “I have been part of the patient scenarios where students practiced medical type procedures at the pretend hospital they have at the university,” he says. “I had to report what they had done, such as whether they had treated [me] with respect, and that the person came first, how they communicated with me, how they approached me.” The work with the university is expanding and Treat Me Right! has recruited 12 learning disability awareness trainers – all with learning disabilities – to help with the workload.

Keavney helps Morris coordinate the trainers and train them. “The trainers are getting so involved in university life – and getting paid to do it – doing presentations in training and get involved in patient scenarios,” Morris says.

More than just trainingTreat Me Right! now also does work in the community with people with learning disabilities. For example, the campaign has worked with local dentists to help make them more accessible to people with learning disabilities. After helping to facilitate a consultation with local dentists as part of the 2013 Big Health Check, Morris and Keavney made good contacts with them and set about improving the service. For instance, More than just training Treat Me Right! now also does work in the community with people with learning disabilities. For example, the campaign has worked with local dentists to help make them more accessible to people with learning disabilities.

After helping to facilitate a consultation with local dentists as part of the 2013 Big Health Check, Morris and Keavney made good contacts with them and set about improving the service. For instance, carers had said they didn’t know what was available to them – local dentists offer a specialised service for people who are nervous about having their teeth checked – so Treat Me Right! developed some information in an easy read format to explain this. “We also recently did an open day at a dentist in Acton, where people with learning disabilities who were frightened of the dentist could come in and find out more about what goes on,” Morris says.

“For example, they went into reception and spoke to the receptionist who explained what they do, and the forms they need to fill in. It is much more fun and less pressurised than when you come in for an appointment and find this stuff out. “Then we had people going into the dentist’s chair – we have lots of photos of people looking frightened just getting in the chair – but afterwards they were like ‘it’s not so bad…’ They could ask questions, put special glasses on, try the water and suction on their hands – they saw the x-ray machine and how it works. In the last room there was a model of a tooth, and you could see what it looks like inside. They showed pictures of what gums look like if you don’t brush, or drink too many fizzy drinks.”

“People who came said they felt a lot more comfortable afterwards,” concludes Morris. Treat Me Right! also does specific workshops about certain types of health issues, such as sexual health or cancer screening for people with learning disabilities. “John has been involved with coordinating and setting those up,” says Morris. Keavney adds that people with learning disabilities often don’t know much about these. “Cancer awareness is low,” he says.

Making a difference This shows the difference that Treat Me Right! has made in the six years it has been in operation. But it is the feedback from people who use healthcare services that really highlights this. “When we go and see carers and people with learning disabilities in the community, they say things like ‘my experience [of hospital] was so fantastic, they couldn’t do enough for us’ and that’s fantastic, that’s why we’re doing it,” says Morris.

“For example, people with learning disabilities can get fasttracked through A&E or avoid going from one ward to another because that can be distressing.” Keavney agrees: “The stuff that Treat Me Right! does really works and makes a difference. I have met lots of people with learning disabilities and carers who tell me good stories about how they have seen changes in the way they were treated at Ealing Hospital, or by their local GP. They say they want other hospitals and health services to make similar improvements and I agree!”